@Squeezy! People who make "helpful", uninvited suggestion on how I could get better really p*** me off. Really? Before becoming ill I was a sensible adult with an intellectually demanding career and a mortgage and a life. I've also had 2 log decades to have a think about it. Have a think before you open your trap and ask yourself if it's likely that some other idiot might have suggested the same thing before!
I hope that wasn't directed at my suggestion about Sjogrens.??? In general I agree that it's a pain being offered obvious and unhelpful suggestions. My response depends on how it's done. If I feel someone genuinely cares, and is trying to be helpful, I forgive them. But if it's done in a tone of criticism and judgement that we're not trying hard enough and are to blame for our continuing problems, then I heartily agree that this is highly insensitive and sometimes outright cruel.
No @Trish, not directed at you at all! So sorry that it sounded like it was aimed at you ! Sjogrens is a perfectly reasonable suggestion. No. We all try to help and make suggestions here. This is rather different as I see it from well meaning family & friends who don't really bother to find out about the condition but never fail to have a suggestion. Which can often be a veiled dig that the patient should have more gumption and go do something ....like join the gym, or LP or some such
Thank you both so much! I really appreciate your messages. @Trish I was indeed tested for Sjogren's Syndrome a few years ago, both blood test and by salivary gland. Negative. Eye doc was at a loss for another reason for the severity of my dry eye problem. If not Autoimmune, then what? I supposed it's neurological thing, but since found out it can be yet another thyroid symptom. <bangs head on wall > @Invisible Woman yes absolutely agree! The amount of idiocy we get told is appalling. The cognitive dissonance I feel in these exchanges is too distressing to handle one I'm so worn out. But this time my Aunt suggested I get some exercise - just a few minutes slow stroll in fresh air. It's a good idea. All I manages today was to sit outside for 10 minutes. Tomorrow I'll try to get to the bench a minute from the gate. Thank you both. I really needed to connect with people who understand, today.
Oh, and daughter back at college! I'm sleeping in her bed, away from the snore monster. Will be lovely not wearing earplugs
I think I slept better last night. Didn't lie awake for as long. Not so many night wakings. But I am immobile. Zonked. Eyelids closing, eyes sore, brain is porridge. Limbs are comfortably heavy. I'm usually similar to this, but with a thread of unease winding through me. And not quite so immobile - I trudge through mud. Today I think I'd crawl. I've slept a bit more, and feel worse. Jesus. I've got a second cup of tea at my side, thanks to my husband. I desperately need a shower and to wash my hair. It's been a week. I can't. I can't. I have to sleep.
Sleep when you need to @Squeezy and maybe you can come out the other side with some improvement. We're with you in this
@Skycloud and everyone who liked my post - thank you so much for your support. Your words mean so much to me. I'm in tears! The struggle... The frustration. Being understood is everything. xxx
If it's any consolation, my plan is to shower and wash hair once a week max. I often don't manage that! Sleep and rest are number one in my book. Nothing worse than insomnia, unless it's finding a porcupine in your bed! Don't sweat the cleanliness--it's overrated. I trust my husband to tell me when I smell too bad.
@Louie41 you are a tonic! Porcupine in bed definitely the worst! Although going to the bathroom and kids getting in my bed, thinking it hilarious, as I stand there just dying while they giggle (aged 14 and 18, Jesus), is almost as bad! I also wash my hair once a week. Blessed with dry scalp and hair. No grease! Annoying for styling, cos frizzy, but a godsend when ill like this. But once I go over a week - scaly scurf yuck. But I like being clean daily. Too cold to air dry now. Why is towelling off such a huge effort?
Maybe you would find drying off naturally in a towelling bathrobe/dressing gown easier. Top tip I learnt off PR, I think.
STUFF SLEEP HYGIENE! Yesterday I got out of bed at 7:30pm. Had a good cry about how shitty my life is, cos even lying on the couch hurt. But was able to watch TV for some fabulous distraction. Ah, escapism! (Gotham, 4 episodes). Than half an hour of music listening via YouTube. Lots of bright screen time! Turns out watching TV til midnight, then flopping into bed works for me. Better than reading - which is meant to unwind you, but keeps me awake. I fell asleep within an hour, and had less night wakings! The joy! I also managed to get an hour long nap after 5pm. Stupid time for sleep. I'm now wondering what else I can do in contravention of the hallowed Sleep Hygiene Rules? Caffeine after 2pm? Vigorous Exercise?
Back to effing insomnia Had to take my 2-week-off break from bio identical progesterone. Only difference in routine. Back on it in a week. Hope that means I'll sleep again. 3 hours the other night, then slept OK-ish one night, then about 4 hours in 3 parts last night. 1-3am in bed. Wide awake. Less than 3.30-4:30 ish on couch. Back to bed. Drifting till 5:30 ish. AAAARRRFGGHH! Going to get tear ducts plugged, 24 hour trial. Soluble. Hopefully help. I'm so effed up from lack of sleep.
Ahhh, @Squeezy! I'm frustrated on your behalf. A few years ago, I was in a pattern of playing Freecell until about 3 or 4 in the morning, then would sleep until about 11 or 12 noon the next day. I got sent to a health psychologist who essentially told me that, if I was managing to go to sleep when I went to bed at 3 or 4, and slept pretty well for at least 7 hours, I just shouldn't sweat it. I should, he said, just view those hours as what my body wanted. The reason I played Frecell until so late was because, earlier, I was wired but tired, and couldn't fall asleep. But playing Freecell that late into the night completely exhausted my brain and I almost always went to sleep right away when I finally went to bed. Haven't had that issue so much since taking the N.A.C. I don't go to sleep easily, but usually manage within an hour (spent listening to a book that I already know well). I think worrying about not sleeping makes it a lot worse, although I also completely understand the agony and frustration. Frecell helps me immensely.
@Louie41 Thanks! Being hormonal is making everything so horrible . I generally get through the hours and days with a fairly positive outlook. Despite my whiny posts. Or because of! 20 years ago, I'd play Tetris til my wired but tired brain ran down. Now it's too stressful! I've never tried Freecell. Got to balance a slight challenge to numb my brain, while being something I can handle with that same soggy brain. It's great if you can get a good, solid block of sleep, no matter if it's later. I WISH I could get a solid chunk of hours... I've stopped reading in bed at night because that keeps me awake. I read comics on Instagram with the blue-light filter on high. I've been falling asleep before 1am, but still waking up insanely awake. Yet too physically tired to do anything. All day long I really appreciate this. It's 10pm and I don't want to go to bed only to lie there in the small hours AWAKE again. Yes, agony and frustration! It is torture. I feel like I'm being chipped away at with tiny chisels.
Ouch, @Squeezy I really felt that! That's a painfully beautiful description. It works for the daily grinding wear of severe ME too. I hope you got more sleep over the weekend?
Hi @Indigophoton, I wish I could say I did. I'm so sorry you identify with my description. But also very grateful. Do you have severe ME? I'm so sorry, if you do. Mine was moderate. Housebound since the summer. Bedbound often. And that was before the insomnia. I cried buckets this morning from, as you say, the sheer daily grinding wear of it. It's gruelling! I sat outside in the fresh air, and whilst I enjoyed the sunlight through the leaves of the trees, I cried from exhaustion and frustration, and because I just want to LIVE! But I'm being chipped away at by those tiny chisels. It hurts.
